I've dithered of days about writing this but just don't know where else to go.
I am really struggling at the moment dispite telling myself I'm a lucky girl to be here etc etc
Every 8 weeks I return to Oncology, for a review. every 8 weeks we repeat the Ca125, every 8 weeks we wait. Wait for the news, wait for the outcome.. Apart from my Ca 125 going a bit wonky once it's been the same ish since October when I finished chemo.
I feel like I'm in waiting limbo and it sucks, I really want to get back on track to stop feeling so scared all the time.
I'm so sad, angry and livid with living like this, my poor husband is living with a witch at the moment. I would go to the McMillan drop in but our hospital is 50 miles away - (yes I live in remote North Cornwall)
I feel feeble asking given what some of you ladies are going through at the moment, but..
What do I do ladies, how do I get to my new normal.....
Huge loves to all
Zelda 🌻🌻🌻
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I will let you know when I get there love, I don’t know how we keep going but we do, we always seem to be waiting for results of one test or the other I’m waiting for scan results won’t know until 30th April friends say oh that’s not long to wait lol they don’t know do they.
All I can suggest is what i do and that’s fill my days so I don’t have time to think.
Plan a nice holiday, the weather is changing and the sun is trying it’s best so to stay out, I always feel better in summer it’s been a long winter.
I do keep incredibly busy with running our own business and growing all our own veg..
somehow I get mad over the stupidest tinchy thing so, that in turn makes me livid and tetchy 😬 totally irrational for someone who was totally unflappable before..
It does change us, that’s the one thing that gets me most how I used to just brush everything off now it’s all just too much to deal with I never had problems just solution now it’s all problems thank god for my husband he keeps me grounded x
I really sympathise and I think you’ll find that loads of ladies here understand exactly what you’re going through cos we’ve all been there, are still there and have got a cupboard full of t-shirts to prove it!! From chatting to others in this same boat, I’ve found some find their new normal more easily than others. I’m still working on it. Have you thought about some counselling? Your CNS may be able to put you in touch with specialist help or a Mindfullness course. As Trish says, finding plenty of distractions helps. I found that the rawness of these emotions faded as the months passed. You will get there. Love Jo 🌼🌹🌸🌺🌻
I certainly found it very helpful. Give yourself a hug and congratulate yourself in getting through chemotherapy which by any standards is a big achievement 🙂
I went for counselling at the Cove at Truro hospital. My CNS referred me and it was very good. I just cried for the first session but got better as time went on - can't help thinking that the operation leaves your body and mind in a state of shock.
I don’t have the answer, but what I will say is that I’ve agreed with my onc that I won’t ask my CA125 anymore. That little number stressed me out too much. I’m leaving it with her to discuss it with me if there’s anything to note. This has helped my mental well being immeasurably. I haven’t had an update on it since the end of January, and although I get the odd pang of wanting to know, I feel as if a weight has been lifted. I’m still on Avastin, so I know it has been monitored every 3 weeks since then, but for now I’m assuming no news is good news. Maybe I’m being naive, but life is a lot more fun.
You’ve just taken a huge step in moving forwards sharing this with us and asking for some help.
We all know exactly how you feel and it is true that some of us get to their new ‘normal’ easier, than others do, it’s still really early days for you it’s all still so fresh in your mind.
I think it’s really scary when the seemingly never ending round of treatment and appointment rollercoasters stop and it’s then down to check ups, you feel like you’ve been cast adrift a bit. You will get used to this in time and be able to embrace your new ‘normal’ too. I’m 4 years down the road next month and I still get the jitters at check up time.
It’s fairly easy to be physically busy and have full days but it doesn’t shut your head up does it? And what’s going on in there doesn’t go away and then we go to bed and our brains go into overdrive and seemingly minor things become major in the wee small hours, we all do this to a greater or lesser extent, it’s part of trying to rationalise what we’ve been through and trying to work out why.
I think you could benefit from talking with somebody, I had some CBT therapy and it really helped me to put things into perspective. I’ve not done mindfulness but believe it’s really useful and helpful. Speak with your GP or onc team and ask if there’s anything available, if they don’t know how you’re struggling they can’t help. In the meantime we’re all here for for you and you can unload with us as much as you need to, sometimes just putting things down in ‘writing’ can be quite cathartic.
Take lots of care and keep in touch lovely ❤️Xx Jane
Ps my hubby lived with an alien when I was diagnosed, during my treatment and also for 12 months after, now I’m back to annoying him for all the same reasons I had prior to my diagnosis 😂, there is a light, sometimes it’s a long tunnel but there is an end to the tunnel.❤️❤️
Jane, you are such a lovely lady. I’m loving the alien reference and totally get that bit. I don’t know why we punish ourselves so much when our bodies have been punished enough already but I guess that’s just human nature.
You know those tooth pots people put their false teeth in at night. I’d like one just to put my brain in overnight..
From everyone’s advice today I will seek a little help, just to get me back on the right path, it’s obvious I need it, I guess being a woman we think we can do it all.
This lady is temporally broken and need some help pulling her teal knickers up!
I know exactly what you mean! I also struggled after treatment finished. Luckily I was able to throw myself into work and writing but it never really goes away. Give yourself time and do get some support if you can... much love Lyndy xx
I find that meditation centres me and the affirmations have helped change my thought patterns. I'm able to acknowledge what I'm going through, but manage to switch things to a positive/optomistic thought. I've been through darkness and light, and I'll pick light any day. And I'm willing to work to achieve that.
I've changed my thinking about my scans and blood work. Now my thoughts are -- these tests will detect the start of any recurrence or new cancer and I'm so lucky to be in the system so I have a chance to get better.
Your new normal is whatever you want it to be. The way I look at it, our lives have never been routine or stable. Something always comes up. We're just not sitting on the front porch as life goes by. We're active participants.
You can get to where you want to be, Zelda. It's not easy, but it's doable. Counselling will help.
What I'm talking about isn't all sunshine and goofy smiles. We all have our down days and vicious thoughts. But those don't define who we are, and those don't get to take over.
I hate to say it, but this is the new normal. Every eight weeks seems quite often to have blood tests. I have mine done every four months, but the apprehension and the waiting for the wheels to come off the cart, are always there. I think we just have to learn to live with it.
Sorry to hear you’re feeling a bit low and it’s completely understandable that you’re up and down and feeling in limbo, and yes scared. I guess all of us are in some state of waiting, wondering and hoping that all will be ok...it’s a case of learning to manage the uncertainty and I know that’s not easy at all.
My oncologist has referred me to a physcotherapist so I’m hoping that will help me to get my head round my diagnosis and to handle any fears for the future, maybe it would help you too?
I do yearn for my old carefree life but I feel for anyone who has had that diagnosis they lose that feeling....but it’s a case of living with a new normal as you say but staying hopeful and focusing on the positives however hard that may be.
Your time and advice has helped me realise what I need to do and after ending yesterday in a big snotty mess I did the right thing in asking.
We tried to have a child for 20 years and ten years ago gave up as nothing worked out, I got over that and We found a new normal then, I guess I'll get there sooner or later, just with a bit more help!
I think we can all totally relate to how you feel.
I recurred after eight months first line. I finished second line end of Feb and feel in limbo like you. It’s the most anxious feeling imaginable.
Our lives will never be like others but we do our best to get by every day. I say damn cancer, it’s not taking any more from me. I tell myself cancer hates happiness so I try and be happy. Mostly I am but it’s always there in the background. I keep working and keep busy and I do forget about the blighter at times.
Thank you,. I have support actually amazing support from my husband. All my family live away and just don't get it no matter how hard I try. In the end I just distance myself from them as its a case of she looks well so must be! If only we could unzip and let them see inside....
I'm going to phone my CNS today and see what's out there for me.
So so sorry that you are feeling like this , but as you can see this is completely normal and extremely common at this stage.
Forgive me if you have explained this already , but being checked every eight weeks seems very very frequent. Do you know your monitoring plan and if so when will it be before you are being sen every three months and then every six months ? There is a school of thought that check ups are very stressful for patients. Being seen this often , if this is what you want is of course fine.
As the ladies who replied above recommend , and you are already doing is keeping as busy as you can and surrounding yourself with people you live.
Time really heals everything and these feelings will definitely reduce in frequency and intensity over time xxxx
You've had loads of good advice already and it's good to see you sounding a bit perkier.
My take is: it does get easier in some ways to live with it, the longer you do. But in other ways nothing changes and that anxiety around clinics and tests never goes away. I'm surprised at 8 weekly tests. My standard of care was 3 monthly. I'd ask why and perhaps suggest less frequent appointments ( would cost them less too!). At the moment I'm on monthly clinics because of the drug I'm on. I just hate the day before them. And yes, I don't recognise myself sometimes either. You do get back to having more in common with how you used to be, but it does take time and is up and down. xx
Hi Zelda. It's hard to believe at the moment but you will know when you hit the point where your wheel of life starts turning again.
In the first half year after my diagnosis and surgery, I felt like holding my breath all the time. I wouldn't plan or commit to a single day out that was further away than a few days from now, let alone a distant holiday. I wanted to curl up in this black hole and ignore the future.. any future.
At some point, the feeling turned around. I felt like having a life again and could be looking forward to events. Although I am not sure what the trigger for the change was, I believe having friends/family, a cozy OC community and some counseling were all contributing positive factors in this development. Especially going to Maggies once a months and meeting up with fellow OC ladies. While we did talk a bit about our illness, it wasn't the only topic.. and we sorta nudged each other out of the hole.
As the saying goes and as the posts illustrate you are not alone. I can sooooo relate to this. This bl...y situation is not on my mind all of the time but a lot of the time. And I try and do anything to distract myself from thinking about it.sometimes I am successful and sometimes I am not. I just try and deal with it the best I can. I know it is a waste of my time to constantly focus on it but sometimes it cannot be helped so I try not to beat myself up . I do try and live by the adage Carpe Diem so on that note I am off out in the fresh air to walk the dog and look at the sea.. Love Chris
I hope all the support and advice you’ve already had is helping. I’m not where you are at but after the surgery and first line chemo I was lead to believe things would get better when I was just on Avastin. Instead it felt like the rug had been pulled from under me, I felt like yesterday’s news - and still had the spectre hanging over me.
I went for counselling and that helped. There is also a book I always recommend to people who have come to the end of active treatment but still see the spectre when they look over their shoulder. Here it is and it made total sense to me - even if I now know I will never quite get to the NED stage:-
The Cancer Survivor’s Companion by Dr Frances Goodhart and Lucy Atkins. At the very least it will give you something to read when you can’t sleep at night!
Hi Zelda, this waiting game is the worst, isn't it? I've been a bit like that for five years now, every day expecting it could have come back or moved to another part of my body but in saying that I think it's a bit like a death, you gradually have days where you barely think about it and I've even had short periods when I don't think about it at all.
Because I buy things that will last ages, new clothes, holidays etc deep down I must think I'm going to be here to use them. I've just bought a guitar and I say why would I bother if I really think when I go for my next appointment it will have returned.
You will find it gets easier and you're probably not a witch at all just worried and concerned. Don't beat yourself up about it. What you've been through you're allowed to be a bit worried sometime. We are the lucky ones, fighting another day. I try to fill my days to take my mind off it.
You take care and if you're feeling a bit low tell us about it and we'll all try to help.
It's a tough one; we feel like we're just walking around waiting for the hammer to fall, or the other shoe to drop. And that tyranny of frequent blood tests and checks constantly reminds us we have a problem, certainly concentrates the mind on it. If its any comfort, people who have had heart attacks and any other form of cancer are in the same boat, even if they're not having regular check ups; the fear that whatever it is will return or might happen again is ever present, and all we can learn to do is to live anyway, because we are here, and breathing and functioning, whatever might or might not happen next week or next year.
In reality, anyone's continued existence is always uncertain, it always has been; its just, unless we've had some very serious health problem, we don't think about it or connect with it at all, we just assume everything will be fine. But the reality is, no one gets out of here alive, however and whenever they leave, and all kinds of things could happen that are not cancer related - war could break out, a pandemic sweeps the world, you suddenly get afflicted by, I don't know, sepsis, pnuemonia, all kinds of illnesses that might suddenly carry you off; or you get run over by a bus and a whole host of other accidents. Having cancer the way we all have forcibly reveals that stark reality, the fact that ultimately, we don't really have total control over our lives, however much we think we do. But we're alive nonetheless, and I try to concentrate on today, how I am now, what I'm doing now, and not give in to dark imaginings of what might be coming next - which is why mindfulness is such a good thing, for it does focus on that attitude. A little bit of mindfulness meditation when the fear rises is quite a useful thing, so that might be a good thing to do, as the others say.
Ultimately, we live with this because there's no other choice; but realising everyone lives their lives at risk all the time, unacknowledge it or not, helped me to get a grip on the stark reality of my existence now, because this is my new 'normal'. I still don't like it, wish it would just be a bad dream - but it's amazing what the human spirit gets used to after a while, we are very adaptable animals. I'll just sum this up by saying, you're absolutely not alone in the difficulty you're having, many of us are on the same journey; and by recommending either counselling or a mindfullness course, if you can find one... and a trip to the Maggi Centre, if you have one you can access.
The only things I think I can add to all that is above is that, if you cannot access counselling or a mindfulness course locally, the NHS has some 'approved' Apps and websites for coping with what they term 'Mental Health' which includes the anxiety and stress we all experience; the link is: apps.beta.nhs.uk/
The only Cancer App is for breast cancer and is more a 'treatment focus' than 'wellbeing' focus.
I did the Be Mindful course, which is right at the end of their list of Mental Health Apps/course, almost seven years ago on diagnosis, then did a full Mindfulness Stress Reduction course with eight other who were there for work and learning, not for cancer, and have now moved onto using Headscape (headspace.com/headspace-med.... My husband, after putting up with my version of being alien (loved that description of yours), my husband chose the App from an internet search and tried it. He's found it immensely helpful for coping with all the uncertainty of his work, our house-move, location move and my cancer, plus plus; we now listen together...something I'd never have dreamed would happen in all our almost 49 years of marriage! Old dogs can definitely learn new tricks!
Be kind and gentle with yourself, exercise well, rest well and focus on growing your healthy cells!
I'm about to leave for my CA125 test...spread out to almost 6 monthly now because of remission but like us all, I feel deeply churny inside...tummy and brain. Loved your 'false teeth pot' for our brain as well...great stuff!
Hi, Zelda. Your words mirror mine. I was diagnosed in 2015. Stage 3. I had never been sick with anything in my entire life. Once surgery and 6 rounds of chemo were done I began the 3 month 125 follow ups. I felt like a prisoner. Weird because it wasn't until my recurrence that I appreciate the point of the test. Numbers jumped a little and here I am back in chemo. When the found a tiny nodule adjacent to my liver I told the PA that I was relieved. She turned to me and said "so you were waiting for this other shoe to drop eh""
I ended up finding this great site with all these wonderful ladies and came to terms that we are living with a condition which we are lucky enough to be able to stay ahead of.
You will be fine. As long as you listen to your body and stay on top of appointments you will always be ahead of this little beast. Yes, it is disappointing to get a recurrence but you may never have one. Every person is different. For now, just enjoy your life and don't think about it. We have something in common. My husband is also married to a witch. Lol. I have done more apologizing in the last 3 years than our whole married life!
Our husbands are saints.
Sending you many hugs and positive energy from NY!
Zelda--such good advice and empathy you have received but if my counseling for this exact reason can help, here it goes. My therapist said to me that when my mind starts to worry, I should ask myself "is worrying today going to change what will happen today" and of course, the answer (on most days!) is no, I can let it go for awhile. Its more of a habit to get into to make it leave your mind for awhile so you can focus on the good things--the reasons you want to stick around. If nothing else, it does help me focus on the things I like and love. At best, it helps me not worry as much although it is my nature.
Hope you get to try some of what has been suggested. Wishing you luck and sending hugs.
I know exactly how u feel and it's almost as though you were in my head writing my thoughts down!! Try stay focussed on something that catches your interest and live each day at a time not around your appointments if you can. It's a bi*tch isn't it? Good luck on your journey I wish u well x
Thanks for putting this out there! I could echo so much of what everyone has written....I was recently (5 weeks ago) declared in "remission" and scheduled for my next check in 3 months. I'm not considered NED yet because there is some very minor residual "caking" in the abdomen, but they believe it's scar tissue. Everyone assumes I'd be ecstatic, but like you, I'm fearful (and ecstatic some days). As I'm reading my own words here I realize the need for counseling! Every twinge in my body sends a signal to my brain saying, "It's back." Gosh how I need to turn that off! This morning I told my daughter not to worry about a college fund for my grandchildren because they will have my money....you see, I'm assuming I won't be here to see them through college.....(Again....need for counseling!) Oh well, know you're not alone, and thanks for clarifying my need for counseling! Right now I'm laughing at myself, and that is a good thing!
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